Patient Information - What is it?

So, what defines good patient information delivery TO the patient?

1. Patient centricity or a patient centered focus is THE key component for success. The best medical communicators put themselves in the shoes of their audience.
2. Language – the language (i.e. medical writing style) should reflect the patient’s standpoint and level of understanding, be culturally sensitive and be intelligible without condescension or inappropriate jargon. Making jokes or trying to be funny in language or culture may not translate well into another.
3. Accuracy – above all, the information should be entirely accurate. Medical communication bias, particularly if not supported by evidence (or even social proof) will be picked up quickly by the vast majority of an adult population. The best objectives for patient information is objective (even if patients can and will apply the information subjectively) and comes from a trusted source.
4. Which leads us to trustworthiness. The best ways to deliver information to patients are via trusted sources. Sadly, in many cases this can be another family member or friend picking the information out of a reality TV show – or worse – from a cartoon – but it’s our job as medical writers and communicators to at least ensure all OUR information is completely trustworthy. We should also pick out methods of information dissemination to reflect this – no dodgy websites or Facebook pages…

There is so much information out there which is not trustworthy, earnestly delivered by charlatans assuring us that they themselves are the only reliable source. Or as bad, by respected sources that are out of date. Timeliness is also another component of good medical communication in the form of patient information.

What about patient information FROM the patient?

This includes:

• Data points collected in clinical trials or outcomes studies (often referred to as Patient-Reported Outcomes or PRO’s). These typically are collected from each patient, ideally at the same time or milestone within a clinical trial – and of course, not only include physical data but also psychological and psychosocial patient information.
• Patient advisory boards or focus groups are another means of collective patient information, and of course we can also include case stories, online questionnaires and interviews – patients are often gratifyingly willing to tell us a great deal about themselves and their healthcare successes and failures.
• Increasingly, patients are invited to speak at congresses or meetings of healthcare professionals to lend their insights.

So how does a medical communications agency interact with patient information?

Sometimes we produce it – those myriad ways of getting information to patients can be supported by good medical writing skills coupled with an intimate knowledge of the disease, drug or device in question. Experienced and thoughtful medical writers who can reach patients successfully by their medical writing skills are rare (although we have a lot of them in our external team; we’re unusually fortunate).

Sometimes we develop the means of collecting it – by writing great questionnaires that not only help collect accurate patient data but also ensure the overall collection of data is reliable, valid, and timely; and will encourage good answers to relevant questions. This is another rare medical writing skill, and often needs the input of statisticians to ensure the questionnaire is capable of doing its job.

Above all, we keep it safe. We uphold the highest standards of confidentiality, ethical and legal compliance, and realise that patient information from the patient is a transaction of great trust and vulnerability. Although in most cases we receive patient information in a collective anonymized form via big data or clinical trial results tables, we are especially aware (for example, when writing serious adverse event narratives for clinical study reports) that we have when we are dealing with an individual’s personal data we need to treat it with sensitivity and respect.